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Thread: Feeling Hopeless and alone, again...

  1. #1
    Join Date
    Apr 2015
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    Feeling Hopeless and alone, again...

    Hi everyone,

    Lately I have really been trying to just believe the neurologists... and get over this horrible fear of ALS. But i just feel like my symptoms won't let me. The constant twitching in my hand is what really scares me. I will be trying to read a book and a finger will just start twitching. I feel like this hand is not as coordinated when typing, I tend to keep using my left hand to do everything, which is really scaring me. On top of all of this, this is the hand that I have the weird lines in. I know people keep saying the lines are normal, but I don't think that they have always been there.... I would have noticed them, when I first began fearing ALS because I remember reading something on an ALS forum about a women's hands looking as if she has been soaking in water for days. Although, i'm not sure this meets the description of what my fingers look like. The wrinkles seem to be getting worse and worse.

    I don't know where to turn, my doctor makes me feel ashamed every time I visit. My dad is a hypochondriac and my doctor knows I also suffer from OCD and anxiety and therefore I feel as if he has labelled me as a crazy person who never REALLY has anything wrong.

    I want to talk to my doctor about the lines, and get some reassurance, but I am afraid to...


    I feel lost and alone, I know I must be frustrating everyone just like I frustrate my boyfriend and my family.


    Thank you for listening to this rant...

    Any support would be really appreciated, I feel so depressed and hopeless.




    yours,

    Lilly
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  2. #2
    Join Date
    Mar 2015
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    1,383

    Re: Feeling Hopeless and alone, again...

    You are not frustrating me, but if you keep thinking ALS you are going to miss what it really is. Have you looked for anything else? Or can you not? You have to you know.

  3. #3
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    Apr 2015
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    Re: Feeling Hopeless and alone, again...

    Hi Davit,

    I don't know what else to look for, I have been trying to look for other possibilities trust me. I don't know if carpel tunnel causes finger twitching... but the twitching is in the hand which I have been diagnosed with carpel tunnel in.

    As for the lines I know they could be linked to adrenal fatigue, which is caused by stress, I just wish the weird lines would move into my other hand if they are infact from adrenal fatigue.
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  4. #4
    Join Date
    May 2014
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    182

    Re: Feeling Hopeless and alone, again...

    Have you had a nerve/muscle test? EMG I think it is..

    If you have and that's come back normal - not likely to be ALS.

    Have you considered PNH? Peripheral Nerve Hyperexcitability? I've had the nerve test and diagnosed with issues but after further tests decided it was benign. Can chat more if need be. But those lines really are normal in my opinion.

    ---------- Post added at 20:17 ---------- Previous post was at 20:14 ----------

    I imagine carpal tunnel will cause twitching as well as pain and tingling..

  5. #5
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    Apr 2015
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    207

    Re: Feeling Hopeless and alone, again...

    Hi Trueman,

    I had two nerve conduction tests, but the 2 neurologists I have been to never mentioned the EMG as necessary. I didn't ask for it because, I thought it might cause me more stress and anxiety especially if I got some scary result. Also I have been told that if my physical exam is basically normal I don't need an EMG to rule out ALS. Although now that we are talking about it, I wish I got one.
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  6. #6
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    Re: Feeling Hopeless and alone, again...

    Quote Originally Posted by Lilly13 View Post
    Hi Trueman,

    I had two nerve conduction tests, but the 2 neurologists I have been to never mentioned the EMG as necessary. I didn't ask for it because, I thought it might cause me more stress and anxiety especially if I got some scary result. Also I have been told that if my physical exam is basically normal I don't need an EMG to rule out ALS. Although now that we are talking about it, I wish I got one.
    You have to get ALS out of your head. It's one that a lot with HA fear. I've been there. Just tell it to shove off!

    Is the twitching only in your hand and the same hand as the carpal tunnel? If so it is highly likely to do with that..

  7. #7
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    Apr 2015
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    Re: Feeling Hopeless and alone, again...

    Hi Trueman,

    the twitching is pretty much everywhere... I noticed it first when my leg was just jolting out -out of no where.. then came those weird rippling twitches... then a thumper in my arms - now its in my fingers on the carpel tunnel hand. And the stupid LINES - they seem to be getting more prominent... as I said though I can't find very much evidence to connect the lines to ALS- PHEW. Yes, I know... I need to get it out of my head,.. but it is hard. Especially when I read stories saying oh, the neuro said I had BFS and then a year later I was diagnosed with ALS. Its so scary.
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  8. #8
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    Re: Feeling Hopeless and alone, again...

    Well I was diagnosed with BFS which is PNH and I haven't got ALS three years later!

    I have twitching all over just like you.. Ripples and thumpers. I've learned to live with it. Sometimes it fades enough to forget about it a week or so or at least go 'oh their goes my twitches' and laugh. Other days it's flipping severely annoying and can trigger my HA. I still think it might be linked to something maybe an auto immune issue and GP keeps and eye on these things. Presently got a potential thyroid issue. But you know.. And I can hear it in your posts.. ALS is highly unlikely. Go about your day without thinking about it for a week or two. No disaster will come from you just trying to forget about it for a bit and then see how you feel.

  9. #9
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    Apr 2015
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    Re: Feeling Hopeless and alone, again...

    Hi Trueman you are very right.

    I have also learned not to hang out around the BFS website.. it is safer here.

    Did you have any tummy bug before the onset of twitching... I had colitis ( but a viral form...) and then a month later the twitching began. I have read this of others as well. I guess any answer would give me relief. I know I need to just forget it ... its just hard because I can feel the stupid twitches.
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  10. #10
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    May 2014
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    Re: Feeling Hopeless and alone, again...

    Actually I swear my PNH started straight after sedation for a colonoscopy! Never had a problem until a few days after that. Reckon it could have damaged muscles or triggered something...

    ---------- Post added at 21:24 ---------- Previous post was at 21:23 ----------

    Just seen your post.. Ha ha great minds. Maybe there is something in that too...

    ---------- Post added at 21:27 ---------- Previous post was at 21:24 ----------

    Btw I think I've had about 50 twitches in the time I've sat here posting to you

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